Friday, March 26, 2010

So the symbolism of having my procedure scheduled for Easter Sunday was not lost on me (though now it is scheduled for a couple days after). The idea of getting my body "rebooted" at Easter is a simple leap to the core Christian concept of Resurrection.

And of course it is also spring, and evidence of rebirth is everywhere - the cherry blossoms have come and gone - little lambs and chicks robin's eggs - crocus and daffodils etc etc...

I get it OK? No need to hit me over the head with it.

So, in the last few days I've had to "restore" my iPhone due to a mysterious hardware failure. It suddenly would not function as a phone - no carrier signal/no bars.

I spent a couple of painful cycles of trying to reboot the iPhone, popping SIM card in and out, and doing a "restore" from software. Needless to say, while watching the little blue bar filling the bar slowly from left to right, I couldn't help but think of the process of recovering "myself" in the transplant that I'm facing - day "zero" is likely Monday April 12th.

Finally I visited the AT&T store and got a new card - which seemed to work - when I was in the store... and then failed again as soon as I walked outside.

At the Genius Bar at the Apple store the next day, the guy did some diagnostics on my phone and "couldn't detect anything wrong", but felt that overall the unit looked to be "in great shape" so he chose to replace it with a new unit. (Note: those two phrases in quotes are exactly what they've been saying about me in the medical realm - that there's no trace of disease and that I'm young and healthy).

It is now less than two weeks before I am scheduled to go "up on the hill" for my treatment. It is hard not to feel like I'm am astronaut preparing for a mission in space. Anticipating the physical strain, the isolation and interruption of normal life, the danger, the unknown... OK maybe I'm being a little overly dramatic, but there is always fear facing the unknown.

Julie did a little searching on "the google" looking for information on my new chemo protocol: BEAM, and discovered this blog about another man's experience with the same procedure that I'm going to go through:

She read to me from some of his posts - specifically about the days he was in the midst of the BEAM protocol - getting the poisons** - and hearing the specifics of how it went for this guy was actually quite reassuring. It sounds like chemo-therapy, which I'm now familiar with and know what to expect. This is MASSIVE chemo-therapy, but, at least it is something I've experienced before.

I know that I can tolerate the poisons pretty well. When you read the list of published side effects for this stuff it is pretty scary, but, my previous chemo experiences mostly made me feel exhausted - fatigued. I can get through that. It sucks, and I wouldn't wish it on anybody, but if you know there is a positive outcome ahead, you can get through it.

** I love whole euphemism of the term "Chemo-Therapy" - what they are putting in you isn't therapeutic - it's POISON! Why do you think the nurses put on all this protective gear when they bring it to you.. they don't want to get any of that therapeutic stuff on THEM!

Tuesday, March 16, 2010

The final collection of Mark's bone marrow stem cells this morning yielded over 1 million cells. This is compared to a total of 1.9 million collected in January in 4 consecutive days, so it was a bonanza harvest today! I can only conclude that the Telecaster is indeed working its "stimulating" magic. To prepare for the harvest (in addition to rocking out with the Tele) Mark had 3 shots of Neupogen each of the last five days, and a booster shot at the clinic last night. He now has sufficient stem cells in the freezer to proceed with the transplant (not our personal freezer...).

Dr. Maziarz, BMT guru, showed up for a brief bedside chat this morning and presented the papers for Mark to sign to consent to the transplant. We were a bit taken aback, since we understood we would get one more detailed conversation about the transplant, timing, alternatives, etc. before giving the final go-ahead. We are 99% convinced that the transplant is necessary, but now have a March 31 appointment with Dr. M to get that last 1% of questions and doubts answered before signing the papers.

Dr. M confirmed that the treatment plan in the hospital prior to the transplant will no longer include full body radiation (due to the radiation already given to Mark's eyes). Instead, Mark will be given 6 days of the chemotherapy regimen BEAM, which is a combination of 4 chemo drugs. Mark will check into the OHSU hospital on April 5 or 6 instead of April 4, due to some differences in timing of the regimens.

There is now a stretch of two weeks with no doctor's appointments - hooray! We are taking off this weekend for Skamania Lodge in the Columbia Gorge. Check it out:

Sunday, March 14, 2010

Hello gorgeous! I've been thinking I needed a Telecaster in my life for some time now (in fact Julie gave me an envelope with some cash last year for my birthday to get one), but sometimes you just gotta wait till the right one comes along.

This is a 62R - meaning it is a reissue of a 1962 model Fender Telecaster. I bought it last week from a young blues guitarist named TJ. It is a pretty sweet instrument and it certainly is pretty!

I"m not sure if this was a midlife crisis moment, or a pre-chemo/hospital move.. but either way, it was fun to bring it home and play. Part of my thinking is I can take this to the hospital and play it quietly/privately with maybe headphones so I don't feel like I'm performing every time I pick up a guitar.... besides, it just looks so damn hot right?

Monday, March 8, 2010

The good news is that Mark's PET scan from last Friday came back clear, showing no cancer activity anywhere in the body, which is great!

The "not so sure about news" is that our 2 hour consultation this morning with Radiation Oncology turned into 4 hours with a question mark at the end. Last week we were told by the BMT coordinator that Mark's pre-transplant treatment would include total body radiation, thus today's consult. But it gradually became clear this morning that the radiation docs are skeptical of proceeding with full body radiation, given the amount of radiation Mark has already had to his eyes. So now we need to schedule another consult with the BMT doc, Dr. Maziarz. It is easy to feel that these doctors should be coordinating the treatment plan with each other a little better...

After that long morning, Mark and I definitely deserved an excellent lunch, which we enjoyed at Bread & Ink on SE Hawthorne: pasta with arugula, bacon and chevre, and a salad with avocado, grapefruit and kiwi. Then we drove home, and Mark rode his bike in to work in the sunshine. OK, we're feeling a little better now.

Wednesday, March 3, 2010

The bone marrow transplant patient and caregiver class we went to this morning mostly reviewed info we already had, with some additional details.

Some good news: we can delay Mark's admission to the hospital from March 30 until April 4, which we are happy about. That will allow Mark to sing in church on Easter morning, April 4, before checking in to the hospital that afternoon; there is some resonance there, isn't there? Also, we can host Kelly and some of her friends the week before when they are in Portland during spring break from Grinnell.

Mark will have full body radiation and high dose chemotherapy for the first week in the hospital, which will wipe out his immune system as a side effect. (He will have a central line, either a Neostar or a PICC line, for intravenous access during the hospital stay and afterwards.) Mark will then get his own bone marrow stem cells transfused into his blood stream, and will have what the nurses call "a baby immune system" for a number of weeks. He'll stay in the hospital several more weeks with a lot of precautions against infection. When he comes home around May 1, he'll still be on lots of precautions, including that he can't cook because he can't handle - or eat - any raw food! We'll be on high alert for any signs of infection, and Mark will get his blood counts checked every few days at OHSU.

After the BMT class this morning, lunch at Olympic Provisions at 107 SE Washington (http://www.olympicprovisions.com - recommended!) and a stop at Portland Music to look at electric guitars raised our spirits quite a bit. (Mark seems to think a new Fender Telecaster would be a very good companion in the hospital...)

Next up: PET scan this Friday and appointment with radiation oncology on Monday.

Tuesday, March 2, 2010

There are so many and so many are - actually - inspiring. Please send along or comment on this thread if you have any particular favorites that you'd like to share - I guess restricted to somewhat life affirming and uplifting topics that you think might be, well, affirming and uplifting to someone in m position.

So here's the first one, attributed to Martin Luther King Jr., (though my limited Internet serches can't reliably attribute this to Dr King; anyway it is a cool image that I have to come to grips with somehow anyway:

>>>>>>>>>>>>>>>>>>>>>>>>>"Like a traveler on a train we can put down our bags. We can relax our grip and trust in the unfolding of life. Do not worry. There is a web of life into which we are born, from which we can never fall. We are caught in an inescapable network of mutuality, tied in a single garment of destiny."